Exploring caregivers' attitudes and beliefs about nutrition and weight management for young people with Duchenne muscular dystrophy
Natassja Billich, Paula Bray, Helen Truby, Maureen Evans, Monique M. Ryan, Kate Carroll, Katy de Valle, Daniella Villano, Andrew Kornberg, Bianca Sowerby, Michelle A. Farrar, Manoj P. Menezes, Sandra Holland, Rachel Lindeback, Anita Cairns, Zoe E. Davidson- Physiology (medical)
- Cellular and Molecular Neuroscience
- Neurology (clinical)
- Physiology
Abstract
Introduction/Aims
Obesity disproportionately affects children and adolescents with Duchenne muscular dystrophy (DMD) and with adverse consequences for disease progression. This study aims to: explore barriers, enablers, attitudes, and beliefs about nutrition and weight management; and to obtain caregiver preferences for the design of a weight management program for DMD.
Methods
We surveyed caregivers of young people with DMD from four Australian pediatric neuromuscular clinics. Survey questions were informed by the Theoretical Domains Framework and purposefully designed to explore barriers and enablers to food and weight management. Caregivers were asked to identify their preferred features in a weight management program for families living with DMD.
Results
Fifty‐three caregivers completed the survey. Almost half (48%) perceived their son as above healthy weight. Consequences for those children were perceived to be self‐consciousness (71%), a negative impact on self‐esteem (64%) and movement (57%). Preventing weight gain was a common reason for providing healthy food and healthy eating was a high priority for families. Barriers to that intention included: time constraints, selective food preferences, and insufficient nutrition information. Caregivers preferred an intensive six‐week weight management program addressing appetite management and screen time.
Discussion
Managing weight is an important issue for caregivers of sons with DMD; yet several barriers exist. Individualized 6 week programs are preferred by caregivers to improve weight management for DMD.